This special issue of National Disability Institute's Washington Insider gives an update on the fight to save Medicaid and offers information to help readers find and contact their Senators so that they can share their stories about what Medicaid means to them.

The Current Threat to Medicaid

Last week, the United States Senate released the “Better Care Reconciliation Act” (BCRA), its proposed legislation to repeal and replace the Affordable Care Act (ACA/“Obamacare”). Similar to the recently passed House bill – the American Health Care Act (AHCA) – this proposed legislation, if passed and signed into law, would devastate the disability community by fundamentally altering the funding structure of Medicaid. By capping the amount of federal dollars provided to states through the Medicaid program, this legislation would drastically prohibit the ability of states to provide the supports and services that are essential to allowing children and adults with disabilities to live, work and thrive in the community.

According to the Congressional Budget Office (CBO), the non-partisan fiscal agent responsible for estimating the costs of proposed legislation, the BCRA would result in the loss of 22 million Americans' health insurance and cut Medicaid funding by approximately $772 billion over the next 10 years. Cuts of this magnitude would inevitably mean severe loss of supports and services, reduced enrollment in Home and Community-Based Services (HCBS) and decreased provider rates.

Additionally, despite the legislation just being made public and despite the devastating analysis provided by the CBO, the Senate leadership has indicated that it intends to take this legislation to the floor for a vote as soon as possible after the July 4th recess. This will likely be absent a committee process, absent any hearing to better understand the legislation and absent any legitimate opportunities for sincere debate or suggested amendments.

National Disability Institute (NDI) has been standing alongside the larger disability community in an effort to educate members of the Senate about the largely irreversible consequences of this legislation, particularly that cutting and/or capping Medicaid is unacceptable. However, it is of utmost importance that members hear from you and the time is now. Below are instructions on how to contact your Senators, along with a suggested script. We, at NDI, strongly encourage you to act now: the future of people with disabilities could be decided within the next two weeks.

Share Your Story

Your Senators (and their staff) need to understand what Medicaid means to you and your family. We encourage you to share short stories on how the supports and services provided through the Medicaid program have helped you, your family member(s) or friend(s) with a disability live, work and/or thrive in the community. Additionally, it is important to paint a picture on how that would change if Congress passes the currently proposed legislation.

If you are not comfortable with sharing your story or would like some help, please feel free to use the following script as a guide (attributed to the Center for Public Representation):

Hello, this is [Name]. I’m a resident of [City, State] and [I/my child/sister/friend/co-worker, etc.] is a person with a disability who relies on Medicaid for health care and community support.

The proposed Better Care Reconciliation Act calls for per capita caps that will result in $772 billion in cuts to Medicaid, leaving 10 million people with disabilities at risk of losing the services that enable them to live and participate in the community.

This would be devastating to individuals and families.

A health care plan that would leave 22 million more people uninsured by 2026 is an unacceptable replacement for the Affordable Care Act. Please pass my concerns along to [Senator’s Name].

Thank you for taking my call!

If you are leaving a voicemail: Please leave your full street address and zip code to ensure your call is tallied.

Optional: Add A Personal Story

Again, personal stories are the most effective form of advocacy. Consider the following:

If you or a family member are on Medicaid (including a waiver), what are the most important services to you? What difference has that made in your life and/or the life of your family member?

What was your and/or your family member’s lives like before receiving Medicaid services?

Are you or a family member on a waitlist for Medicaid services? How would getting services make a difference in your lives?

My Medicaid Story: Testimony from Chris Rodriguez

My name is Chris Rodriguez and I am the Director of Public Policy at National Disability Institute (NDI). Along with the help of our communications team, I am responsible for the contents of our monthly Washington Insider e-newsletter. This month, in the midst of our fight to preserve Medicaid, which approximately 10 million of Americans with disabilities rely on for support to live in their communities daily, I felt compelled to share my own family’s story with you.

What follows is taken from testimony I gave several years ago at the White House, when Medicaid was in peril. Unfortunately, we are again in the position to defend this vital support for people with disabilities, and so this testimony remains as relevant today as it did when I first gave it.

My parents, brother and I are from Tomball, Texas, a mid-size suburb just outside of Houston. Though we are far from the typical family, it is important to remember that we are an extension and a representation of the over 750,000 families in Texas alone with a loved one with an intellectual and developmental disability. Thirty-one years ago, as a young married couple, my parents had their first baby boy. Not unlike most young parents, they shared the same hopes, dreams and aspirations for their new found joy. However, it was only six months into his new life that they learned that their son (TJ), my big brother, had been born with intellectual and developmental disabilities. In that moment their lives were forever changed.

Although the challenges and obstacles faced by my family during TJ’s earlier years and throughout his becoming an adult, were severe, often placing us in situations in which we were forced to fight tirelessly to obtain rights and privileges most of us take for granted such as childcare, adequate public education, and extra-curricular activities absent of stares and, at times, teasing, it pains me to say that these past few years have perhaps been the most challenging.

As TJ has gotten older his physical challenges have become exponentially more significant disproportionately to his age, not an uncommon characteristic in aging individuals with disabilities. Due to his mild cerebral palsy on his left side, TJ has had to compensate all these years with the right side of his body. As a result, he has developed severe back arthritis and abnormalities in his feet and ankles, all contributing to balance issues and frequent falling. At this point, my brother can no longer walk without the assistance of a walker, transport chair or wheelchair. As you can imagine, this has caused a steep increase in his medical needs. To date, TJ experiences severe difficulties in situations which most of us consider to be elementary and commonplace. My parents, on a daily basis, bathe him, brush his teeth, help get him dressed, help him communicate and prepare his meals; effectively, our family, along with support staff, act as TJ’s eyes, ears, arms and legs every day without fail.

Despite these challenges, and by in large due to the ever diligent efforts of my parents, TJ is one of the happiest people you could have the privilege to meet, living in the community and receiving the essential supports and services needed to live as independently and productively as possible. The fundamental component which allows TJ these opportunities is without reservation the supports and services provided through Medicaid. Through these supports, services and healthcare benefits, funded through Medicaid dollars, TJ receives essential comprehensive healthcare which provides for his neurologist, endocrinologist, rehabilitation specialist, occasional home care, orthopedic specialist and primary care, not to mention the medications which allow him the limited mobility that he still has. Moreover, through my brother’s Medicaid Home and Community Based Services Slot, which took nine years for him to receive, TJ gains additional critical supports such as his vocal and mobility devices (walker, wheelchair, speech computer), vocational training and speech therapy, and my parents are provided the funds to make home modifications to better suit my brother’s emerging mobility issues. Without these benefits, provided through Medicaid, TJ would not be able to function at a level which, not only allows him to live in the community, but affords him the opportunity to enjoy his life.

Furthermore, the ability of my parents to shoulder the monetary costs of these specialized medical supports, without Medicaid, would be simply unfeasible (despite my father’s relatively well paying job and employer-based insurance). Without Medicaid my brother, along with millions of others, are at risk of being forced into archaic institutional type care, and unimaginable option no family should have to consider.

The bottom line is: These Medicaid and Home and Community Based Supports, which appear to be hanging in the balance, are the pillars which my family, and families like mine, build a better life for their son, daughter, brother or sister with an intellectual and developmental disability. Without these programs, everything we have worked so hard to achieve for TJ would be crushed, and life, despite how far we have come, will inevitably be changed for the worse. On behalf of my brother, my family and the countless families which could not be here today, I beg you, please make the right decision and refrain from cutting this critical lifeline.